Why me?
Have you ever thought this, or said these two words?
I am a person who has Narcolepsy. When I was diagnosed with Narcolepsy, at first, I felt so much relief. I felt like finally, I know what it is! Finally, I knew why I fell asleep so many times when it wasn't normal. I knew why I couldn't focus on one thing for very long. I knew why my knees would buckle, and why all of the sudden I just couldn't talk! Wheew. After 14 years of wondering what the heck was wrong with me, I'm not crazy, or lazy, I just have Narcolepsy! WOOHOO!!!
And then came the hurricane. Why me? Why me? Why didn't the doctors test me for this 10 years ago? Why didn't they listen to me? Why did they just say "you have depression, that is why you are so sleepy." And all of the people in my life, they got so mad at me. They told me I needed to get more sleep and eat right. I remember people telling me everything from how selfish I was for not doing things that I should have been doing, to someone asking me if I had a drug problem. errrrrrrr. I got so mad. Mad at the whole world! Mad at God for giving me this illness!!
Today, thank God, I am not mad anymore. Ok, I admit, I still have my "not so pleasant" moments, and sometimes I do feel depressed, but I stopped blaming other people for just simply not knowing. I stopped the inner hate that I had for myself for not being able to live up to other people's standards. I started living again. One thing that helped was finally admitting to myself that I have Narcolepsy. I have limitations. I still am working on that one, but I learn more each day.
The really strange thing is that even though Narcolepsy is not my friend, it has been my teacher. I don't believe that God wants anyone to be ill, and some illnesses are caused by the way we care or don't care for ourselves. I don't know why I have Narcolepsy, but I don't think about as much anymore. If I ever start thinking about how bad I have it, it takes just a few minutes to remember how much worse it could be and how many other people in this world have so much less than I do. So many people suffer with so much, and I know that I am so fortunate.
I have learned that having an illness that is not easily visible to the eye is not easy. I have learned that someone telling me that they care and that they understand means more to me than anything anyone could ever say to me. And here's a little tip, If you ever want someone to know you really care, flowers and gifts are nice, but telling them is by far the most incredible, healing gift anyone could ever give and receive!!
I now feel that my illness has allowed me to relate to others with more compassion and empathy. And let me tell you, when I have a day that I feel awake, I mean really alive, I appreciate that more than you could ever know.
I ain't gonna lie, I do have day where I don't as if I really want to live. But, at the same time, I certainly don't want to die. I just want my life to be different, and I know that that is something that can only come from within.
I drive, I live independently. I can care for myself, and I am free make my own choices. I am not sick, and I am not crazy or lazy. I am blessed. I am not only a survivor, I am a conqueror!
Of course, if I had the chance right now to get rid of this Narcolepsy, I would jump and jump and jump at the chance to be Narcolepsy free!! But until that day comes, I thank God for everything that he has taught me, and teaches me from having Narcolepsy.
If you have gotten this far in reading...Thank you. I just want you to know, whoever you are, you can find good in the rough things in life. God loves you. There is a reason for everything...just do your best to use it all; It is a struggle, and we are all human, just do your best, change it around and turn it into somethin' good. You are loved. You are a living, breathing, human being. You have a purpose, and life is the journey in which the many purposes unfold.
Go easy,
Ja:)
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12 comments:
I can definitely identify with this -- because I've had issues with depression, everyone always chalked up my sleep issues to that. It was only when the antidepressants did nothing but make me loopy that they realized it might be something more. When I look back on it, I realize I've been having these issues for probably about eight years, over seven of which went undiagnosed.
I felt like such a hypochondriac going to the doctor's office every month to get the latest experimental prescription. In a way, it was a relief to have an actual name to put to everything that had been going on, but whenever I mention that I have narcolepsy to anyone, they wonder why I haven't already fallen asleep while talking to them. *slaps forehead*
That and I'm still trying to get past feeling guilty that I won't be able to drive until the baby's born and I'm back on my meds.
But it's good to know we're not alone out there!
jenn,
Thanks so much for your response! It is so nice to know that others really do understand. It is crazy out there sometimes!! Girl please, You betta not be feeling guilty about not driving!!! It was not something that you chose! Don't forget that.
Go easy,
Ja
I am SO glad I found this page! It is nice to know there are other narcoleptics out there going through the same struggles! Thanks for sharing!
amanda,
thanks for leaving your comment, I am sorry it took me so long to write something back here. I am so glad you liked the blog, and I hope you will visit again. Nice to know that you can relate too!
Go Easy,
Ja
Ditto!
http://asleepygirl.blogspot.com/
"If you have gotten this far in reading...Thank you. I just want you to know, whoever you are, you can find good in the rough things in life. God loves you. There is a reason for everything...just do your best to use it all; It is a struggle, and we are all human, just do your best, change it around and turn it into somethin' good. You are loved. You are a living, breathing, human being. You have a purpose, and life is the journey in which the many purposes unfold."
you speak directly to me as tears cascade my tired, puffy face. maybe God sent me to this page right now, as today is a day of immense struggle... i've little to no ability to communicate with others on why i am unable to complete seemingly simple tasks on this day. here's to praying tomorrow will be better. blessings to you, Ja, your words speak beautiful, much appreciated truth.
Bella,
I cannot express what your comment means to me today. Thank you so much for taking the time to add it. I can relate to your words on a level that I know you understand, and I do believe, as you wrote, that God sent you to this page. I needed to read this today, and God answered my prayers. Thank you and may God bless you. Your photos are heaven on earth!!!!!
Thanks, you are in my prayers,
Ja
This message completely made my day! Since grade school I've fallen asleep in classes, been teased in high school (I was even given the sleepy care bear as a joke) and struggled immensely in college. Now at 26 dealing with this illness while having to work all day has brought many more challenges. While reading your post I had tears running down my face before I even realized I was crying. Yikes. I believe everything happens for a reason and I was led to your page today for comfort. Thank you again. You really did make my day!!
I can identify with you, I was diagnosed with narcolepsy when I was around 12, I have suicide thoughts and I hated life. I now use pills and stuff to keep my lower the cataplexy seizures. But those pills take away my emotions. So I almost never have any positive feelings. That really makes a fellowship with Jesus even harder, cause I can't feel his love as strong as others. And I rarely show any real emotions. I can't deal with emotional problems when on meds, cause they don't occur, but stay lurking on the bottom effecting me in various ways. When i forget my mes for some hours I can start crying for all kinds of things that I didn't feel.
I am a teenager and still at school and suffer with narcolepsy, cataplexy and major depression. I try to look for the good things in life i really do but its hard. I want to go out partying with my friends and i want to do well in school and get good grades and get a good job but the thing is i just find it so difficult. I find it so hard to concentrate and when i do it never lasts long because i get so tired. I was diagnosed just over a year ago and have tried plenty of medications but nothing seems to work so far. I feel so alone in all of this, no one seems to know how i feel i am glad i have found other people in this world with this illness. This page is so inspiring and i am so happy to hear that people do make a life for themselves with this illness. Unfortunately i no longer believe in God, not because of my narcolepsy but because of some other traumatic things that happened in my childhood. I wish i did believe though, it must be nice to believe that there is someone up there looking out for you. I have suicidal thoughts quite a lot and i don't mean to sound ungrateful because don't get me wrong i have an amazing family who i love more than anything and i know that my life could be a lot worse but i just can't help it. No matter how hard i try to be positive these thoughts like creep up on me out of no where. I guess i just wanted to say thank you for this page because well it cheered me up a little and made me feel like i can get through this time in my life. I hope to find a medication that works and to pass my exams and to go on to university. I hope to become a social worker and have a family. I hope to make a better life for myself and be really happy.
Dear Anonymous that left the comment on Sept 2, 2013,
PART ONE OF TWO (please see both comments, they wouldnt fit into one)
I am glad that you read my page and commented. Thank you for both. When I read your comment, I feel like I can relate to a lot of the feeling that you talk about. I have not updated this blog for a long time! But I do still try to check on it, and I am glad that I saw your comment. Since writing this blog entry, many things have happened, good and bad in my life. I do know that it is possible for a person to be thankful for everything that they have, and still dread life. I don't know why some people think if you are depressed you are not grateful for what you have, but those people need some education!!
I do know that if these feeling get to the point where you feel like you might act on any thoughts you might have of harming yourself, you HAVE TO get help. Tell someone you trust how you are feeling. If you dont feel like telling someone you know call a "hotline" like 1-800-273-8255 National Suicide Prevention Lifeline. There are many more too if you Google them. The one I listed is just one of many and I know that they will listen too. They don't just panic, they really will just talk with you and try to help.
I know that the medicines that docs give us dont always work, and I can remember times when I just wanted to SCREAM and give up. I still havent found any medicine that works very well, but, I have good days and I have really crappy days. Dont forget to tell your doctors, teachers and people in your life how you are doing. Teachers can make accomodations, and doctors need to know if medicines are not working. If they dont seem to care, then try to find another doc. You probably already know all of this, but since I dont know you, I am trying to think of things that people have shared with me over time too.:)
Dear Anonymous that left the comment on Sept 2, 2013,
PART TWO OF TWO (please see both comments, they wouldnt fit into one)
The one thing that I feel completely confident in telling you, even though I don't know you, is that even though when you feel your worst, and you might feel like it all isn't worth it anymore, it is never worth ending life. Please believe this, everything we feel and go through is TEMPORARY. it may not feel like it at the time your going through it, but just think about it. Do you remember going through something in your past, and now you look back and think how it is different now? YOU got through it!! And you can get through this. You will not always feel the way you feel now. The proof is when you remember getting though things in your past! That is complete PROOF! You owe it to yourself to have a chance to see things get and be better. Really think about all of the things that you have already gotten through!
I am so glad to see that you still have hopes and dreams for your future! You SOOO deserve to make them come true. oh, and your plans for your future may change, or you may find others things to add to those. It will most likely be harder for you than it would be for someone who does not have an illness, But by reaching out to others (like you are doing now)learning more about yourself and how you can adapt, and learning through time, you will do great things! Share things with your family and friends, people that you can trust. You can do this!!
One more thing, I remember a time when I was feeling soooo horrible, and thinking about life and death. I dont know how, but I found this webpage. It was the best thing that I had ever read about feeling this way. I promise, it is not about God, or just about "thinking positive". It is just a webpage that changed my life that day. Please,PLEASE take a look at it, and please just read it all. If you don't like it, You can blame me:) But I just have a feeling you will get it!!! Here is the address http://www.metanoia.org/suicide/
PS about not being sure about God: I think that happens to many people, but because you mention it, it must be something you care about. All I can say is just to keep searching. Pray if you want to. Talk to others about their beliefs. Just be YOU. If you ever want to contact me, you can too. Zionart (@gmail.com).
Sincerely,
Ja:)
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